Blog

The Becoming Crisis of Disability Studies

This entry is part of a collaborative series on disabilities between the Federation’s Equity Issues Portfolio and the Canadian Disability Studies Association/ Association Canadienne des Études sur l’Incapacité

The heat wave of July 18th to 23rd in Toronto was accompanied by the high pressure of the international Disability Studies Summer Institute hosted by the Ontario Institute for Studies in Education at the University of Toronto. By invitation, 50 emerging and established scholars from Ontario, the United States and the United Kingdom and representing more than 10 disciplines across the social sciences and humanities, attended the Institute, which was oriented to exploring the significance of disability studies for both academic and everyday life.

Our orienting aims for this gathering were rather simple: to address the conceptions of disability at work, both within and out of disability studies, so as to rethink them anew; to bring conceptions of race and disability in touch with one another so as to revisit their on-going separation; and to do something other than celebrate disability studies arrival into the academy or to proclaim its marginal status as forgotten sister of those critical endeavours that already study issues of equity. Basically, make disability studies matter differently by reflecting on what it is we are already doing.

Structurally speaking, this intense week involved three sessions a day where all present listened to a variety of people offer their work and with plenty of time, never enough, for participants to respond. The keynote speakers included scholars whose research and publications critically explore various dimensions of disability, race and difference:

There was also one evening session open to the general public where the question “Why Disability Studies?” was addressed. The audience put this into conversation with their own interests in how differences in learning, in language, and in accessibility requirements resulted in forms of disablement as well as a growing desire to question this form of social devaluation.

Overall, the Summer Institute provided a means for both established and emerging disability studies scholars to question what disability studies is and what it needs to be in order for it to better address the cultural production of disability as a “naturally” excludable type.

It is, though, not so easy to ask how to generate a crisis in our own understanding by researching the key concepts or critical analytic moves already at work in disability studies. It is difficult to restlessly return to reflect on disability studies’ current procedures and beliefs in order to face embodiment itself as a dynamic scene for social inquiry. Moreover, from the point of view of common sense, it would seem that problems of disability, and thus disability studies, are simply a little too obvious to fret about.

The 2011 World Report on Disability, recently released by the World Health Organization and the World Bank, certainly confirms the obviousness of the problem of disability while remaining relatively uninterested in how it conceives of disability as a problem in the first place. The new Report suggests, as has the United Nations in the past, that the “silent crisis” of the global state of disability is worse than first imagined.

What do we know about disability?
First, what do we know about prevalence? There are higher estimates of prevalence. More than a billion people are estimated to live with some form of disability, or about 15 percent of the world’s population (based on 2010 global population estimates). This is higher than previous World Health Organization estimates, which date from the 1970s and suggested around 10 percent.

What does the WHO and World Bank’s World Report on Disability tell us? According to the World Health Survey around 785 million (15.6 percent) persons 15 years and older live with a disability, while the Global Burden of Disease estimates a figure of around 975 million (19.4 percent) persons. Of these, the World Health Survey estimates that 110 million people (2.2 percent) have very significant difficulties in functioning, while the Global Burden of Disease estimates that 190 million (3.8 percent) have “severe disability” – the equivalent of disability inferred for conditions such as quadriplegia, severe depression, or blindness. Only the Global Burden of Disease measures childhood disabilities (0–14 years), which is estimated to be 95 million (5.1 percent) children, of whom 13 million (0.7 percent) have “severe disability.”

Second, what else do we know about disability? We know it to be located in certain bodies and to be more prevalent than previously thought. We know disability to be a special some-thing; a thing that conditions the body; it is a measurable entity of rank-able and count-able severity; it is a billion conditions giving rise to difficulties for individuals and burdensome to others; disability is lack of function, disease, debilitating. The Report tells us that we should know disability is difficulty, that it has struck a large number people who, if one reads on, are nonetheless regarded as though an unexpected and unanticipated few, who should be included, who should receive aid and assistance, but unfortunately do not.

By mapping disability as individual difficulty, we are shown that there is much disability but little participation by disabled people in routine areas of daily life, such as learning, labour, leisure, and even love. We should also note that there is a strange over-representation of disability in some locales such as in all forms of incarceration, in offices of social assistance or mental health or welfare regimes, in separate or special education classrooms, and anywhere there is poverty, war, or state brutality… these locales are very inclusive of disabled people.

Strangely enough, what we can know about disability is typically dependent on the body remaining a distinctly individual problem rarely figured as a collective one. Disability as a billion individualized nodes of difficulty, some representing the edges of humanity itself, becomes knowable as a burden for others. Mapped from above as though disability is simply a biological or functional calamity that has befallen a large number of unfortunate few, it becomes millions of individual natural disasters to which others are being asked by the Report to respond, or respond better.

From the perspective of disability studies, however, attending to this prevalent cultural representation of disability begins to move us toward the need to develop a sense of a crisis, not in bodies, but instead in our ways of conceptualizing our bodies together in social space and over time. The Disability Studies Summer Institute was organized on the theme of a “becoming crisis in understanding” so as to address how disability is understood as problem in the first place. Disability studies itself has the potential to offer a becoming crisis to current ways of understanding disability since it questions the obviousness of the “problem of disability.”

But, during the Institute, seeking this crisis in understanding came with a twist: Could we encounter a crisis in “disability studies” own understandings of disability and impairment? Could we address what we already know in order to wonder about it? For example, does the obviousness of exclusion and discrimination faced by disabled people, especially through the primacy of medicalized definitions of our situation, have something new to say to us other than to point out that disability is present? If the exclusion of disabled people is understood as caused by failed social responses to different forms of embodiment and if it is common to narrate these exclusions as somewhat expected since disability is too difficult, too severe, too burdensome, are we then not facing the very boundaries of the question of what it means to be human, or the edges of community sensibilities? In short, do we need to re-think what we are doing?

During the Disability Studies Summer Institute people were entangled in these sorts of questions. These are questions where we forged some new pathways to understand disability as a dramatic and complex cultural scene where critical interpretations regarding the cultural production of the meaning of persons can be encountered as part of embodied existence in everyday life. This cultural scene included our own conflicting understandings of what ‘disability studies’ is, and how it imagines the social significance of bodies in social space. This prompted the Summer Institute participants to ask about disability studies own institutionalized role in addressing disability as a “thing to be studied” that can end up reproducing so many lives as beneath notice, consumable, expendable or as somehow outside the play of mutual recognition.

But, we did also imagine that disability is not best understood as a million natural disasters striking the unfortunate few and is better addressed as a dramatic cultural scene where the question of what is human and what is nature are often asked. Disability studies, if it is to examine the answers to such questions, or even raise them, needs to gear itself into a consideration of what counts as human in a culture that insists that the encounter with some bodies is an encounter of pure limit (not quite human) and as though limit can be split from possibility by those who count as all-too-human.

“Knowledge production” was another equity issue that was made prevalent through the Summer Institute. To the extent that disability is the exclude-able other, or the naturalized cut off point for critical studies of social exclusion, addressing embodiment through a disability studies perspective can be a way to reinvigorate the desire to question any social practice that normalizes what counts as mainstream knowledge production.

A further twist arose however. Exploring the meaning of human and its resultant knowledge regimes are hardly possible if disability studies itself cannot question its own use of the categories of impairment, question its own identity politics and boundary building, and engage its celebrations of crip community as these all participate in making some others into an unquestioned background against which the disabled figure arises as problem in the first place.

And one last twist: recognizing the need for a self-reflexive analysis is not to ignore that equity oriented research that refuses to avail itself of a disability studies perspective may participate in the production of an on-going potential crisis of a different sort. If we do not conduct an analysis of what we do with bodies, minds, senses and comportments that seem not to fit either in everyday life or academic knowledge production, what remains of disability will always be that which is made to teeter on the edge of danger, degradation, and death. Without an analysis of current cultural conceptions of embodiment, disability will pop up only as an impending emergency understood as crisis. Thus, war, storms, fires, and economic downturns will continue to be occasions where societies draw out depictions of the disabled body as precariously positioned.

Disability again and again triggers the call “Evacuate,” “Take cover,” “Tighten up your resources,” or, “Get real, disability is beyond inclusion.” Yet, how these manoeuvres are actually accomplished in the face of an almost universal desire to sustain versions of the myth of normalcy as a collective Real, will continue to makes some lives questionable and even make what belonging to the human community looks like precarious. Thus there is a need to re-think normalcy itself.

By focusing on both the crisis of exclusion faced by disabled people around the world and the cultural processes of inclusion in the academy, we can continue to uncover the ways normalcy remains a social phenomenon in need of further examination.

Tanya Titchkosky is an associate professor of Disability Studies and the Associate Chair and Graduate Co-ordinator in the Department of Sociology and Equity Studies in Education, Ontario Institute for Studies in Education of the University of Toronto.